johnny ur

Update - June 26, Is this Summer? Edition

I'll bet that I frustrate some of you by not writing for lengthy periods of time. For most of you, hearing about my hospital visits and blood work and other data is something that is fulfilling - being able to stay up to date on my health, removing the cautious questions "so... how are you doing?" - but my extended absence has more to due with my boredom with tedious minutiae than it does with my sadistic desire to torture you all. Seriously. I'm not a sadist. Yet.

Since we last talked, I've been riding the rollercoaster as usual. The past 2-3 weeks have been very good for me. I'm up to 160 lbs - from my lowest and weakest of 140, but still down from what I consider to be my healthy weight of 170-180. This is a small miracle given that I've gained this weight during my chemo treatment over the last 2+ months. I credit much of that to the drugs prescribed to me by the doctors at CINJ. They have been fantastic about seeking the right chemical combination to return me back to a somewhat healthy life. Both of the anti-depressant pills that I take are appetite stimulants - Lexapro and Mirtazapine. And the Mirtazapine has the added benefit of causing sleepiness which has allowed me to stop taking Ambien which never gave me a satisfying sleep.

Most of my blood count numbers are cooperating, with the constant exception of my hemoglobins. I'm receiving an iron transfusion every week (and an occasional blood transfusion) to help keep that up - but I still am anemic to some degree. We're hoping that these iron transfusions will help my body to kickstart its own production of hemo-gremlins and we'll add Procrit to the mix - also to help that natural production. 

I've felt great over the past two weeks - even cutting the grass yesterday and cooking up some pan-seared scallops with couscous and green beans tonight - so I can't complain about that. However, this is a rollercoaster and what goes up...

...What went down is the results of my last CT scan show a new tumor. A little itsy-bitsy one about 1-2cm on the dome of my liver just under the diaphragm. Bad news: New tumor growth. Good news: It's in a location that does not pose a serious, immediate health risk (as opposed to in my lungs, spine or bile ducts). Bad news: This means I am longer in the clinical trial for plitidepsin and gemcitabine as the cancer has "out-smarted" the drugs. Good news: I helped scientific advancement with my participation in the trial (this is no small matter to me - in fact it's one of the main reasons I keep pushing through this) and I can now move on to other drug combinations.

Currently, I'm waiting to hear back from CINJ about another trial that they are running with a drug in combination with cisplatin. Good news: More scientific advancement. Bad news: Again I have to face the gun in a game of russian roulette with the side effect bullets loaded. Who knows how I'll react to these drugs. Good news: The time off from chemo allowed me to go to the dentist and get two major cavities taken care of. There was concern that a) if my platelet count was too low, I could bleed out during any procedure and b) both of the concerned teeth needed major work and possibly a root canal at the going rate of about $2000 per tooth. Luckily, my platelets were at 220 this week (whatever that number means) so no concerns about excessive bleeding and both teeth were able to be cleaned and filled without touching the nerve and without requiring root canals. Relief!

And so it goes. A number of months back, I was in a depressive state where I did not feel like doing anything - inside or outside of the house. Now, I'm enjoying reading again (just started David Foster Wallace's giganta-tome, Infinite Jest) and going outside whenever the rain lets up. 

You can maybe see why I don't update as frequently as before. I got other things on my mind, ya. But don't worry. Important stuff comes up and you'll be at least the fourth to know.

Cycle 2 Wrap-up

The summer time makes it very difficult for me to get motivated to post here. On the days when I'm feeling well, I prefer to be outside, reading a book or playing my guitar. On the days I don't feel well, I definitely do not feel like writing about it. Catch-22 and unfortunately, you, my adoring fans get the short end of the stick. But fear not, I have not disappeared and I will keep coming back to this journal page no matter how frequently or infrequently.

I'm just about wrapping up my second cycle through chemo. Received my third week's treatment yesterday (3 weeks of treatment and then one week off - which will be next week). I almost had another delay in treatment though as my blood tests came back with low white blood counts. Let me back up and explain how the treatment day works:

When I arrive at CINJ, usually between 7:30 and 8AM, the first step after sign in is to check my vitals: weight, blood pressure, and pulse. Then I go to a small private room - most people only get chairs in a common area, but I'm special since I'm in a clinical trial - and a nurse will come in and access my port. The port accessing procedure involves poking a large needle into the port (which does not hurt because I prep the area with lidocaine before I arrive). This needle is attached to the IV tubes where they feed me any drugs, fluids etc. that I need that day. The nurse can then flush the tubing and my port with saline first, and then blood is drawn from the same line. Again, no pain, hardly feel a thing - much more comfortable than a normal IV line in the arm.

The problem has been that, a number of times, my blood tests come back with low counts - usually hemoglobin or albumin or something; this time it was white blood cells - due to the fact that the blood is slightly diluted from the saline flush. So the solution has been to draw blood peripherally from my arm which has given a more accurate count on most occasions. So from now on, they will always do the blood draw from my arm instead of doing double work and causing us to worry.

Other than the stress of having to possibly postpone treatment again, things have been on the up and up for quite a few days now. After last week's treatment, I felt good on Tuesday before a rough Wednesday and Thursday. I had alot of fatigue and grade 1 nausea (yes, that is a medical term). It's that type of queasiness where you have overproduction of saliva in your mouth but you don't need to be sitting near the toilet 24-7. Not all that bad. Friday was a little better and then I had two great days of energy on Saturday and Sunday.

 Sarah and I went to NYC on Saturday to visit some friends of hers over from Germany. I met Bob Ryan - Sports Reporter who often appears on ESPN, and fellow New Jerseyan (he's from Trenton) - in Bryant Park. We took the Staten Island ferry for a free view of the city skyline and then headed up to Stuyvesant Town for a street fair. We finished off the day with a few hours in Central Park before heading home. Good weather, good times.

This week has started off well, too. I'm writing this while getting an iron transfusion - to help prop up my hemoglobins and stave off anemia. I'm always right on the border with my hemoglobin numbers. I need to be at 9.0 (whatever units) or else I can't receive treatment according to the clinical trial rules. I'm usually right at 9.0 to 10.5 when a normal person is up over 14.

But that's enough medical talk for today. I also wanted to share with you a project I worked on recently. One of the social workers here at CINJ (Brenda Bly) has been encouraging me to use my creativity to positively deal with cancer. She told me about a traveling exhibit that would be on display at CINJ for a few weeks at the beginning of June. After some discussion, I decided to do some self-portrait photography with the help of my friend, Izzy Ramirez. I'll post those photos here. Many thanks also to Colleen Grady for her handiwork with the hair shaver.

 I ended up laying the photos out into two 20x30 posters which are now on display in the lobby of CINJ. As I mentioned last week, this could turn into a larger project of photos of men with cancer, but I'm not going to jump the gun just yet. We'll see what happens.

With that, let me post some photos and get packed up. I'm just about done here at the Institute and am ready to take a nap!